Down The Rabbit Hole... Head First... Screaming.
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Thread: Down The Rabbit Hole... Head First... Screaming.

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    Default Down The Rabbit Hole... Head First... Screaming.

    Dramatic title right?

    On December 23rd my little boy was diagnosed with autism.
    (PDD NOS to be exact.)

    I was kind of expecting it. There were, (and I suppose still are) days where I think he's just going to 'snap' out of it.

    Harrison is a loving, nearly 4 year old. He makes pretty good eye contact, and loves to cuddle. He will walk up to any one and introduce himself. For these reasons I didn't expect autism. I suppose too, these are the reasons we were often brushed off and told "Harrison will be just fine. He's just a boy, and boys are slower..."

    He was slower to walk... 19 months... slower to talk... at nearly 4 he is only just beginning to use 4-5 word sentences.
    It's his understanding that worries me the most. He can't follow simple 2 part directions...

    There were a few Autism red flags. He does this weird posturing thing with his arms where he keeps his elbows bent and looks a little like he's surfing. This usually pops up when he's excited. He also talks in the third person. "Harrison go outside... Harrison eat lunch." And of course the obsession... Fire trucks. God forbid you take a fire truck away from him before he is done playing with it. NUCLEAR MELTDOWN.

    So there you go... autism.

    Last edited by stupidcomputer; 01-11-2012 at 01:43 AM.

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    We have been really lucky with H's daycare. They go over and above, trying to help him out... it's just the most amazing place.
    As luck would have it, my awesome day care lady is pregnant. Now we have a few months to find a new daycare. Sigh...
    I've phoned a few places today but they either only have one spot open , or they won't take kids younger then 2.

    (For those of you reading this who don't know me... I have a daughter who is 18 months old.)

    How much do I tell them about Harrison? When I explain it to them it sounds pretty complicated.... and he's not that high maintenance. ( One could argue my daughter is MUCH harder to deal with .) Harrison does come with an aide who helps re direct him during circle time, his aid just helps with him in general. I would think that would be a bonus... you get paid for having a kid at your daycare, but he has one on one with someone else. Sweet.
    It gets complicated when I ask them if they have a space for Harrisons therapy team. It's complicated because I don't even know what this looks like! I have yet to hire a behavioural consultant as everyone appears to be on holidays right now...

    From what I gather I meet with the consultant, they help decide which therapies would benefit H the most, and then I go and hire people who offer these therapies. It looks like he gets about 3 hrs a day ... which is awesome, but if they can't be accommodated at daycare then they come to our house after I get home from work... I just want to play with H when I get home . Harrison is a write off mentally after 4 pm... I think making him work hard after 4 is just setting him up for failure.
    Maybe a Nanny is in our future but I think the social aspect of a daycare is very valuable... especially for Harrison .

    I would really like some one who has gone through all of this to come over, hold my hand and explain how all of this works. It would help if they could, organize the funding, find a new daycare , hire a staff for Harrison, and while I'm dreaming... clean my pig sty house.

    Too much to ask? Probably.

    On a lighter note... I've had a lot of support from my friends and family. A few special someones from this site have reached out and given me info they have picked up along the way or have just offered words of support. Stuff like that really helps.
    Last edited by stupidcomputer; 01-11-2012 at 01:49 AM.

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    Happy New Year!
    We had a great time visiting with friends... I was somewhat mortified when Harrison disappeared for a few minutes and we discovered he had gone upstairs and demolished one of the little girls bedrooms. That's right... demolished. Clothes pulled out of the drawers, every book and toy on the floor...

    At home we have taken most of his things out of his room. He wrecks whatever he sees.

    Other then that ( and even that was pretty funny) we had a great time. He was exhausted, and fell asleep in Daddy's arms while his drunken mother ( 1 margarita ) played dance party on the Wii.
    Here's to 2012!
    Hope the Myans were drunk when they made their calendar...
    Last edited by stupidcomputer; 01-11-2012 at 01:44 AM.

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    So what's new?
    We went to see the geneticist last week. Harrison has something called an isodicentric chromosome... It sounds like there are only 50 or so reported cases of his chromosomal mix up... and even with those bits of information, we really no nothing. We can guess, but only time will tell.
    50% of those with similar chromosomal structure have seizure disorders. We were told not to leave Harrison unattenden in water ( bath, kiddie pool) until he turns nine. After the age of nine if he's been seizure free, it's not likely to happen. But it can start up at any time. I have to admit, that kind of freaked me out. Who am I kidding, this whole thing freaks me out.
    We are going for a kidney ultrasound next month to make sure both of his kidneys are functioning properly... He's never had any issues so we can only assume they are. The Dr. just wants to make sure that it's not just one kidney doing a really great job.

    I'm having a hell of a time trying to organize therapy for my little boy. I'm going to a support group tomorrow to hopefully meet up with parents that have gone down this road... maybe they can tell me the best way to go about hiring 3 or 4 staff to work with Harrison and how best to organize this.

    Hey, if you are reading this and have anything that might help... please feel free to PM me. That's pretty much the whole reason I'm writing a public journal. That, and I hope when I get a handle on things, others can benefite from my findings.

    I need spell check on here...
    Last edited by stupidcomputer; 01-11-2012 at 01:44 AM.

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    So I went to a support group on Wednesday... It was nice to meet people in the samish boat that I am in. I say 'samish' because every situation is different.
    I did learn that I am the first person in the history of the world to be a working mother and raise an autistic child. Seriously, I have not met a single one.
    Sure, I could quit my job... we could sell the house and live on the poverty line... H might get a few benefits from me being home but my daughter would totally lose out. H would lose out too, in that we couldn't travel, or do anything fun because we'd be poor... and I'd be miserable. Don't get me wrong... I could totally be rich and stay at home. But unless we win the lottery, it ain't gonna happen.
    I also learned there is no "best" way to go about hiring therapists for Harrison. I'm going to have to forge this alone.I think I'll need to take a few days off from work to figure the best way to hire his staff.

    It was cute the other day, Harrison was talking about ' pillow music... playing a pillow' ... Of course I had no idea what he was talking about until we watched a parade on youtube and it had pipers on it. ( Bagpipes ) It totally looks like they are playing pillows.
    Last edited by stupidcomputer; 01-13-2012 at 11:16 PM.

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    Sad week... My Oma passed away on Monday morning.
    She loved her great grand children and was lamenting over not being able to watch them grow up.

    Despite navigating the world through tear filled eyes and a tattered heart, I managed to move forward in creating a team for Harrison.
    I hired a behaviour consultant. I feel great about it. It's all coming into place... I now can visualize what this is going to look like. Once my papers come in for the funding, I will hire someone ( or perhaps 2 people) to work with Harrison. My behaviour consultant will train the people I hire . We get free occupational therapy and speech therapy so I won't use the funding for that unless H needs a little more then what is offered. I'm going to look to hire some University students ... maybe some girls who are doing their ECE or related studies.

    I got papers in the mail regarding the funding... and the deadline to have them mailed and received is on Wednesday. So Monday I will go to the post office and priority mail them to Victoria. Thanks for the adequate amount of time to mail these out with regular post... notsomuch
    .

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    Don't you hate it when you find a journal you want to follow and the writer gives up , leaving you wondering what happened? Yeah, me too.

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    Ha ha... okay, I'll fill you in on what's been going on.

    Harrison is going gangbusters with his speech... it's so nice to see.
    I've hired his team and he will start getting therapy in the next few weeks. It will be for 2 hours a day, five days a week. He's come so far without any kind of intervention I can't imagine how great this is going to be for him!
    It will be based on ABA therapy ... he seems to respond well to it ( the few sessions we've tried) which honestly kind of surprises me. But hey, whatever works.
    It's been a year since we started this process... wow. If I were rich I could have done all of this privately, and we'd have started months ago... but alas... thank goodness for the help I'm able to get.

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